Announcement 2019-02-27T13:41:51+00:00


The purpose of this form is to provide patient groups and stakeholders with an accessible platform to outline their thoughts and opinions to propose recommendations for a national rare disease policy. The objective of this project is to produce a comprehensive policy framework in the form of a White Paper. We would like to actively consult with rare disease patients, caregivers, members of advocacy organisations and other stakeholders throughout the drafting of the White Paper to produce a holistic and inclusive proposal.

Please outline any thoughts or comments you have that we could explore and consider adding to our White Paper.

You can access the form here!

If you have any queries and question regarding the form,
please email to :

Thank you for your time and efforts in supporting this project and we look forward to your continued advocacy in championing the need for a national rare disease policy.